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MOM OF ALYSSA, EMILY AND JOSHUA
nicumom |
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GOOD NEWS
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Nov 17, 2009 06:48pm (EST)
Surgery number 4 went very smoothly. Joshua is home recovering this evening. He is very grumpy and in pain. He still has not opened his eyes up all the way. He should be feeling better in the morning.
Dr. Ikram tightened his outside eye muscles so that he can look to the sides without turning his head. She is hopeful that this will be the final surgery. We will have to wait and see how his eyes look once the muscles heal.
Joshua is starting to stand without holding onto anything. He is so proud of himself. He is also starting to ask for his walker so he can zoom around the house. He just about runs when he is using the walker. Everyone has to watch out or they could lose a toe.
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Posted by nicumom | Comments: (4) | Permalink
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WE DID IT!
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Nov 09, 2009 01:17pm (EST)
We got the H1N1 shot for Joshua. I thought Mike was going to throw up as it went in. I really believe that we made the right deicision. Joshua is almost 2 and still on O2 he is very compromised and he would be the baby who would be on the vent or even worse. I would rather live with the other chances.
Joshua also got his synagis last Thursday. I can hardly wait to see the bill. We are guessing $4000. He is so much bigger this year. We are glad we have already met the deductible for the year and we changed our insurance policy for next year so we don't have to pay for the shot in January. 
We had awesome news at the cardiologist today. Joshua's heart looks great. His muscles are not growing thicker because of his lungs still being damaged. His mital valve is still leaking but they could tell toayd that it is caused be a abnormality in the valve. The specialist feels like the abnoramlity will stay the as his heart grows. The pressure in that valve was perfect so the leak is not causing any need for alarm. I was so happy. He will need to be checked every 6 months for a long time but all looks like it will just be a precaution!!!!!
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Posted by nicumom | Comments: (3) | Permalink
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LIVING STRONG
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Oct 28, 2009 06:34pm (EST)
When this journey started almost 2 years ago I never dreamed that our family would be so challenged. Over and over people reassured us that in 2 years we would be amazed by how well Joshua would be doing. I would tell myself he would be okay but I know that I never allowed myself to truly believe it. Now, as we quickly approach the 2 year mark Joshua is exploding with personality, movement and life. He is not allowing life to happen around him anymore. Joshua is involved in every minute of our day. He has the most precious laugh my ears have ever heard. His smile lights up my day. He is living life and loving it!
We are nearing the end of this chapter of our life. Soon, very soon, I think I might be able to read the final words of this chapter called Bringing Home a Very Sick Baby and I am going to start enjoying the chapter of having a Happy Well Toddler.
We give all the credit to our Heavenly Father. This journey has been so difficult and God has held our family close to him through every tough decision, sleepless night and tear filled day.
**Joshua is scheduled for eye muscle surgery on Nov. 17th. Pray the he continues to grow stronger and stays healthy...Thank you.
He is going almost all day and night O2 free!!!!!
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Posted by nicumom | Comments: (6) | Permalink
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SERIOUSLY?!
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Oct 21, 2009 06:45pm (EST)
I just saw a the show New. Mercy. In the show an expectatant women is in a car accident and has to deliver her baby early. They of course did not show a baby but one could tell it was very small 2 or 3 lbs.
The show actually showed the Dad holding the baby in the mother's hospital room and everything was peach keen. He handed her the baby and the Dr. told her the only thing wrong was the baby was small.
I mean seriously that show just showed all kinds of people that prematurity is a little scary for a moment but it really is no big deal. Everything was made to look so easy. URG!!!!
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Posted by nicumom | Comments: (8) | Permalink
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LOVING MY GROWING BOY
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Oct 14, 2009 07:33pm (EST)
I hope I don't jinks Joshua but he is doing so well. He is putting on weight...thanks to Daddy who feeds him in the middle of the night. he is now takig in around 115 kilocalories per day. Let me tell you it is hard work getting that many calories into a little body. Even with the g-tube it is hard to do. We feed him 8 oz of 30 calorie food every 4 hours. He is not a big fan of 8 ozs. at a time but He has not been gaining weight with so we have to get more calories in him.
He still is not swallowing real food but he loves putting it in his mouth and spitting it everywhere. I am gettin really discouraged because I see no end insight. I want him to swallow. The therapist thinks he is doing great. Mike and I sit and think what is she seeing that we aren't seeing. Seriously he is not doing anything more with food then he was doing in May. He still only eats 3 or 4 bites of baby food at a time.
Well, aside from the eatting Joshua is just amazing. He is playing with toys, mimicking his sisters, into everything in out house and weaning off the Os. Yes I said weaning off the Os. Whoo Hoo!!!! He is actually asleep right now stating 95% with out oxygen support. I will hook him up before I go to bed but he is doing better and better.
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Posted by nicumom | Comments: (3) | Permalink
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BUSY ENJOYING MY FAMILY
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Sep 19, 2009 06:56am (EST)
I went back to work and I've not had time to get anything done on-line. Well, the school year is off and running. I have a very energetic group this year.
Joshua never ceases to amaze us. He started pulling himself up last Thursday!!! He thinks he is so big. He just laughs and bounces around once he gets up. As any true boy, as soon as he pulled himself up into a standing position he lifted his foot up to stand on the chair. He wants to climb so bad. He is not coordinated enough yet to get very far. He has several new bruises from all his adventures. HE even cut his eye on the coffee table last week.
He is fighting his first cold of the season. He has been really congested the past few days. I thought he was better because he slept through the night last night but when I got home today I realized he is worse then yesterday.
We are trying to limit Joshua's adventures outside the house now. We are pretty nerves about the H1N1 virus. Joshua would not handle a set back like that very well.
We have the okay for his next eye surgery. I want to wait until November if possible. He is doing great keeping his stats up most of the time. He really wears himself out now that he is moving. As long as he is getting some oxygen he doesn't get out of breath. I think once he puts on a few more pounds he will need the Os even less:)
Speaking of weight he has not gained any weight in a few months. We have to start feeding him during the night. He is still on 30 calorie food. We have been making sure he is getting atleast 32 ozs. a day.
Well, all is great!! Please pray that germs stay away...Joshua needs to have a great winter. He deserves a great, healthy winter.
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Posted by nicumom | Comments: (4) | Permalink
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BUSY WEEK
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Aug 16, 2009 11:02am (EST)
Joshua is just exploding with new found talents. He has mastered crawling and is seriously into everything. We have to keep all the doors shut. He loves to crawl through the house looking for his sisters. I know he can hear since he can track them down with no problems.
We spent this past week at several appointments. He had his 6 month follow up with his general surgeon. His g-tube looked fine. He has a rather ugly growth (a stoma) around the button. We put a steroid cream around it to keep it under control but sometimes it has a mind of its own. I am happy that as long as the cream is being used it stays pretty small. His Dr. took him off Reglan and put him on another med to help with his gag. I am not sure that this new med is making the gag any better. He is still gagging.
We went to Kosairs for a swallow study to make sure that while gagging he is protecting his airway. I was thrilled they were able to get him to behave as badly at the study as he does at home. After crying and gagging over food we found that he is protecting his airway beautifully. It was amazing watching the food just sit in the back of his throat as he gagged and cried and then he would just swallow it right down the correct tube. Yeah!!!!
He also had to go to the ped. this week. She was able to get him almost caught up on all his shots. Joshua has only had the vaccines he had at UofL. He has been too sick every time he has been to get shots before. Mike is taking him back in 6 weeks and he will be completely caught up. Of course this means lots more shots. 
Joshua was 19lbs. 11 ozs and 29 inches long at his appointment. He has had a stomach virus and is so active he has been losing a little weight but we are hoping to start moving back in the right direction.
Since Joshua has become an expert crawler we are noticing him panting and grunting more. It seems like he is always out of breath. He is usually stating within acceptable limits but we have been hooking him up to the Os to give him a little help. I am going to call the pulm. and out if I should just let him go with out the O2 as long as his stats are okay or should I give him support before his stats start to drop. Maybe I just need to give him more breathing treatments. I just don't know so I am going to call and find out.
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Posted by nicumom | Comments: (6) | Permalink
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CRAWLING, CLIMBING, INTO EVERYTHING
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Aug 10, 2009 06:06pm (EST)
Well, we are back from a wonderful week on the beach and Joshua is into everything. He is still dragging one leg a little while crawling but he can get anywhere he wants to go. He has pulled all the O2 tanks out from under the couch, found the electrical outlets and every electronic in the livingroom. He is so busy.
Now that he is crawling he has to take a nap every 2 hours. He is so much stronger then he was but he is still not like the girls were. Everything he does takes so much more from him. I really have to keep a good eye on him. I have noticed him showing more signs of respitory distress since he is on the move. He perks up with some O2 support and a breathing treatment if he is coughing.
Has anyone else noticed increased gagging with crawling? Joshua has always had the "gag" but now he is gagging more and I am noticing it is when he is crawling.
I will post pics. soon.
Erin
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Posted by nicumom | Comments: (3) | Permalink
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I AM NOT GONE...
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Jul 30, 2009 05:56pm (EST)
Hi all...
I have been at a training in Indy this week and now I am packing for Florida. We are planning on having some fun in the sun. I am so tired of clouds and mild temperatures. I want to be able to swim and enjoy some sunshine. I heard on the news today that this is the first time on record that the Louisville area has never had a 90 degree day in the month of July. Crazy.
Before I go...
Joshua is everywhere. He is mastering the art of crawling. It is so cute. He has had his first fight with oxygen tubing. I was very impressed that he knew what was holding him back and he turned around, grabbed the tubing and started pulling.
I am not going to be online while gone...I am giving it up for a week and just enjoying my family.
Erin
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Posted by nicumom | Comments: (7) | Permalink
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